National Amyotrophic Lateral Sclerosis (ALS) Registry

A diagnosis of ALS can be overwhelming. We're here to make sure you have all the facts to better understand and navigate the disease.

Every person living with ALS in the United States can enroll in the National ALS Registry! The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States.

Most importantly, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.

Advocacy led to the establishment of the National ALS Registry by working with Congress to enact the ALS Registry Act and securing federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR).

To learn more about the National ALS Registry or to join, visit the CDC website. 

Obtenga más información sobre el Registro Nacional de ELA en español aquí.

Check out the 2022 ALS Annual Meeting Summary Report from the National ALS Registry. 

Learn about the National ALS Biorepository.